What It Means To Have A Chronic Or Invisible Illness

Lately, there’s been more talk of ‘invisible illness’ and perhaps more taboo or ’embarrassing’ problems. This is partly thanks to those who have come forward and shared their stories, or who have posed for photos with colostomy bags, for instance. An invisible illness is an illness that you can’t see, that doesn’t really have an outer appearance. Those around you probably think you’re a picture of health, or simply ‘fine’, because you can’t see what’s physically going on inside someone’s body or the pain they feel.

The Diagnosis Conundrum

For many, invisible illnesses are probably hard to treat but harder still to diagnose. Many conditions have a lot of overlap when it comes to the symptoms, and many do not have a cut and dried standardised test to say ‘yes’ or ‘no’ to the illness. On top of this, the invisibility of it often means you have to rely on how good you are at explaining the problem; diagnosis rests on a GP or specialist believing what you say, taking it seriously, thinking outside of the box and being open minded when it comes to test interpretations.

Okay, and how about chronic illness?

Chronic, as opposed to acute, is a long-term deal. Where you’ve had symptoms that have persisted, where your illness is ongoing. It may be months or years or a lifetime, but it’s not a short ’bout’ like a cold. Such invisible, chronic illnesses can range from mild to severe, as can their impact on your quality of life. Symptoms may pose a little or large amount of pressure on your day to day living, being minimally or extremely debilitating.

The Impact of Invisible Illnesses

Invisible illnesses come in all different shapes and sizes, and many can still cause embarrassment. Bowel problems, or pelvic floor dysfunction, for instance. It can feel humiliating to tell someone about such things, let alone go in to any detail in order to have someone understand the problems you’re experiencing. It’s not enough just to say ‘I have an autoimmune disease’ or ‘I have bowel problems’. What do these things mean to you? How do they affect you? How do they impact your day to day life?

To try to get someone to appreciate what you’re going through means sharing the nitty gritty details, the personal things you don’t want to talk about for fear of being looked at differently, for feeling embarrassed or ashamed. If you have to take laxatives each day, you may end up trying to plan your day around when you take the tablets, when you’re likely to need the loo, fear of not finding a toilet or the tablets not working. If you have bladder problems, you may need to plan going for that wee every 30 minutes, noting where every available toilet is in town. If you have hypothyroidism, you may need to re-think your schedule so you have the energy to think, let alone to be active in your life.

It’s the fear of embarrassment and judgement, and the fear people will still not understand, that makes invisible illness so difficult to discuss. You could probably tell someone all of your symptoms and the stress they cause until you’re blue in the face, but they still wouldn’t fully understand it, appreciate the importance of it. You may worry they think you’re being melodramatic, a hypochondriac, or just plain lazy. You may worry they’ll think it’s ‘nothing’, not as serious as you make it out to be because they can’t appreciate how important and damaging it is to you.

I therefore feel that it’s not just the invisible, chronic illness that makes life tough. It’s the social impact, and the impact to your mental health and well-being that also takes a toll.

The good news?

Whilst it may be impossible to have others fully understand your unique struggles, there are ways to overcome some of the fear and stigma, ways to have others partly appreciate what you’re going through if you wish to tell them. Whilst there may be no solution to your illness right now, there are ways to better manage it and cope. It is possible to get your life back and start afresh with the body and mind you have, to start living the life you want. And even just a small change, a small bit of hope, comfort, acknowledgement, understanding, strength, can make a big difference. After all, ‘every little helps’!

11 Comments

this post is good . well written. People think when we do things we are well! they think take a tablet and we will be well. I went to Europe last year. Some friends, mind you they have auto immune conditions and fibromyalgia also….asked me how in hells name did i manage to travel. I must be well. if people don’t see it..such as a broken leg etc they pretend its not there.

I’m sorry you also know all to well what it’s like to have a chronic ‘invisible’ illness. I’m glad you like the post, thank you. I’ve just checked and it doesn’t look like you can reblog directly from my posts, but you can feel free to share the URL to any of my posts directly if you’d like 🙂
Caz xx

Love this post. I have 3 invisible diseases. And I think most people don’t realise that I’m still suffering with these diseases, I don’t have a cold that clears up after a few days. These are with me for life!! I suppose we must confuse people as we don’t walk around “being sick” all day, it’s all internal so people just don’t get it.

I’m sorry you know all too well what it’s like to live with an invisible illness. A lot of people don’t seem to ‘get’ the nature of something being chronic or without cure, anticipating that there should be some magic solution or that you’ll ‘get well soon’. Thank you for sharing, and hopefully with more awareness and more open discussion the misunderstanding, ignorance and stigma can be gradually reduced over time.xx